Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer. Issue 1 (February 2020)

• Record Type: Journal Article
• Authors: Akard, Terrah Foster; Wray, Sarah; Friedman, Debra L.; Dietrich, Mary S.; Hendricks-Ferguson, Verna; Given, Barbara; Gerhardt, Cynthia A.; Hinds, Pamela S.; Gilmer, Mary Jo
• Is Part Of: Journal of hospice and palliative nursing. Volume 22:Issue 1(2020)
• Publication Date: 2020-02
• Subjects: caregivers -- children -- hospice and palliative care nursing -- palliative care -- palliative supportive care -- pediatric nursing -- terminal care; Hospice care -- Periodicals; Palliative treatment -- Periodicals; Terminal care -- Periodicals; Nursing -- Philosophy -- Periodicals; Nursing -- Research -- United States -- Periodicals; Hospice nurses -- Training of -- United States -- Periodicals; 616.029
• DOI: 10.1097/NJH.0000000000000614
• Languages: English
• ISSNs: 1522-2179

Abstract

Abstract : Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.